Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Thursday, May 5, 2016

The Ethics of Choosing the Hospital or Heaven

Last Fall a firestorm erupted with regard to a young child, Julianna, whose parents asked her if she wanted to go to the hospital or heaven. A two part CNN story delved into the life of Julianna Snow, a 5 year old child, who has a neurodegenerative condition called Charcot-Marie-Tooth syndrome. For unknown reasons, Julianna's condition is severe. Her mother, Michelle Moon is a neurologist, and wrote about her daughter on a blog she maintains. Link: https://juliannayuri.com Below is a passage that sparked the controversy:

Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

J: not the hospital

M: Even if that means that you will go to heaven if you stay home?

J: Yes

M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

J: Don’t worry. God will take care of me.

M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

J: I understand.

M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

J: That’s OK. God will take care of me. He’s in my heart.

Like many others, I found this discussion deeply disturbing. Can a 5 year old child understand death? Should the discussion have been presented in such a polarizing perspective? Essentially, the mother asked her daughter do you want to live or die. Predictably, CNN and other news outlets relied heavily on emotion. Link: http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-1/index.html Just as predictable, people with a disability, myself included, were taken aback at how Julianna's story was framed. A website was created, Dear Juliana, in which adults with comparable conditions wrote on line letters to Julianna. Link: http://dearjulianna.com I have not thought much about this case despite the fact I found it so disturbing last year. I was prompted to think about Julianna again as there was an excellent essay in MedPageToday by Christy Duan. Link: http://www.medpagetoday.com/PublicHealthPolicy/Ethics/57625 Duan is a fourth year medical student at Albert Einstein College of Medicine and an impressive writer. I think her essay about Julianna and the thorny issue of quality of life was spot on. Duan raised the issue of disability based bias when physicians address what constitutes a life worth living. As most people with a disability can tell you the general public and health care professions often grossly undervalue the quality of our lives. People with a disability routinely receive less care. The more significant the disability the less likely one is to receive appropriate pain management and aggressive life sustaining treatment. Duan wrote:

Instead of viewing disability as something to eliminate, we should appreciate it as a normal part of the human experience which adds valuable perspective. In doing so, we can focus on the real civil rights issue of accessibility and create a better world for everyone – regardless of disability.

Given these inequities, the fight for assisted suicide is incomplete because it creates the illusion of choice. How can one truly choose death when one doesn't have access to existing resources that allow for a dignified life? The right to die and right to live are both important struggles for autonomy. But for people with disabilities, there can be no autonomy without the right to live with assistance. In Julianna's case, these biases could have fatal consequences.

It is the last sentence quoted above that keeps me up at night.
Julianna is not an isolated case. Thanks to modern medical technology the
number of people with a disability, children and adults alike, who are dependent upon medical
technology is ever expanding. Our social response to those with severe
disabilities dependent upon medical technology in the form of respirators,
nutrition via g-tubes, power wheelchairs, synthesized voicing, etc. has been negative if not out right hostile. Life with a disability is perceived to be inherently less
valuable. Hospital stays are tortuous. People who cannot walk are robbed of
their abilities. Medical interventions are painful. The message is not
subtle—people with a disability are a burden to their families and a costly
drain on our health care system. Worse, people with a disability lives are devoid of value. They cannot work.
They only exist. The idea of life with a significant cognitive and physical
deficit is a fearful thing. I have heard the following for many years.

“I would rather die than be paralyzed”.

“I will die before I will let someone else wipe my ass”.

“If I lose my autonomy I will happily end my life”.

“If I get Alzheimers take me out the back door and shoot
me”.

To a degree, Julianna’s story
is a red herring. We are not talking about one child. It is not possible nor is
it advisable to pass judgment on her parents. Parents are given a wide latitude
when making health care decisions for their child as they should. I for one
would never put my son’s life in such a public spot light as Michelle Moon has.
The same can be said for Ashley X parents who publicly support growth
attenuation yet at the same time remain anonymous. The point here it’s never
about the case in question. Avoid the emotion and hysteria. Think. We humans
endure, adapt, and overcome. So exactly what are we people with a disability, a
class of people, enduring, adapting and overcoming? In a word, ableism. We are
adapting to a different body—a body that is too often deemed as nothing more
than dysfunctional and defective. We are enduring class based oppression. We
are overcoming a social system that is exclusive and hostile to our mere
presence. Framing disability in this manner is rational and intensely
unpopular. It is far easier to rely on emotion and pass judgment on others.
This is why projects such as Alice Wong’s Disability Visibility Project and
Dear Julianna are important. Beyond the wheelchair, beyond the imposing medical
technology you will discover something essential—a human being just like
yourself. If you don’t believe me read a
few virtual letters at Dear Julianna. There is nothing to fear.

2 comments:

A movie (made from a popular novel) will open soon. Me Before You is about a young, rather aimless British woman who goes to work as an assistant for a wealthy young man who has become quadriplegic. He wants desperately to go to Switzerland for assisted suicide. She decides she will show him just how worthwhile life can be. He wins, despite the fact that she falls in love with him and he with her.

Guess this one falls right in line with the usual pap. Yep, if you're disabled you can't possibly have a life worth living.

Burton, I am way ahead of you. I am deeply worried about the upcoming film adaption of Me Before You. A good friend described it as a mix of Titanic and Million Dollar Baby. I fear it will be a giant hit in the box office. It has the potential to be a fictional Brittany Maynard sensation with Compassion and Choices and Hollywood leading the propaganda campaign. Of course one cannot have a good quality of life if you have a disability. Death is inspirational. I have urged people to be prepared for the fall out and I am not sure anyone is going to be prepared. As the release date approaches I will either post along blog post or submit an essay to Salon, Atlantic and similar news outlets.